The Slow Decline

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Yesterday afternoon at 12:30, I walked into my exam room for the first time by myself. Every single one of my nerves was on edge. I felt the tears slowly start to slide out of the corners of my eyes. As I sat down on the cold bed in the bright room, I took a deep breath. This would be my first CF doctor’s appointment by myself-without my parents or anyone else in the room. I suddenly decided I wasn’t ready to grow up (who am I kidding, I’ve never felt ready to grow up!).

But being by myself wasn’t the only reason I was nervous. I knew going into this appointment that I had lost weight and I noticed a few weeks ago that my appetite had been decreased. In the past several weeks, I had also noticed an increase in my cough and in the number of times/amount of mucus I had been throwing up. Well, my numbers proved something was going on. From my last appointment in July, I had lost five pounds (that’s a dramatic change for me) and my Pulmonary Lung Function test (PFT) went from 90% to 80%. I haven’t been that low in quite a while. So by this time, I was REALLY nervous. Thoughts of a hospital stay and missing work raced through my mind as I texted my mom to tell her the news. Soon, my dad entered the room. My mom was unable to come on this trip, so my dad said he thought he better be in the room with me in case mom asked him questions. Which we both knew she would 🙂

So, after my nurse came and talked to me, the dietitian entered the room. This was probably the first time I wasn’t too thrilled to see her because I knew what she was thinking. She was very worried about the weight loss and made sure to tell me how severe it was for me. I told her about my decreased appetite and my “food moods” and how, if nothing sounds good, even if I’m hungry, I’m going to choose not to eat. She didn’t like that at all. She suggested to snack anyway, even if nothing sounds good. So in that moment, food became like medicine to me-something that I HAVE to take, even though I don’t want to. It made me want to cry because I honestly love food. I hate seeing eating as a chore, but it seems that’s what it has become until I can get my body back to where it was. The RD left me with a goal of 2300-2700 calories a day.

Before I knew it, Dr. Burk was in the room with his PA, Cyndi and a medical student who actually curtsied after she shook my hand. He immediately asked me how my fall semester had gone. I told him I had actually done pretty well with my treatments over the semester, but that I had missed 2-3 treatments a week. He and Cyndi both said that was fine and they understood. Cyndi mentioned that most college students come in and say they missed their treatments for the whole semester. So that made me feel better. Dr. Burk asked why I thought my lung function was down and why I had lost weight. I took his question too literally it seemed, because when I answered, “Well, because I missed treatments, that caused my lung function to go down and my lung function is associated with my appetite which was then decreased and so I lost weight”, he said, “Here I was just giving you a chance to tell your dad how hard you had been studying!” I was embarrassed, but I told him I had definitely been studying hard.

Dr. Burk then started going over different medications to add to my daily treatment regimen with Cyndi. They finally decided on a bronchodilator mixed with an inhaled steroid called Dulera. This would take the place of my previous bronchodilator, Xopenex, and would help to open up my airways. I was instructed to rinse my mouth out after taking this medication to prevent infection from the steroid and to wait 15 minutes for it to kick in before starting my next medication. So the next medication would be my trusty Hypertonic Saline solution. This tastes like disgusting salt water and helps to thin the mucus in my airways. After that, I will do Pulmozyme once daily, another new medication for me. This will also help to thin the mucus in my lungs. And it is then that I will do my vest for 20 minutes to help loosen the mucus, making it easier for me to cough up. I get to keep my Xopenex inhaler for when I need it throughout the day, so that was nice. So in all, because Dr. Burk increased the number of times I do my treatments from once daily to twice daily, I have a total of approximately 3 hours of treatments to do each day.

Dr. Burk also prescribed Ciprofloxacin and Bactrim to treat the infections in my lungs. Does this sound aggressive to you? It does to me, but it’s much better than a hospital stay and IV antibiotics! I will go back in one month to determine if these aggressive treatments have worked. If they haven’t the hospital stay in Fort Worth is most likely my next option.

After leaving the appointment, I told my best friend on the phone that I just wanted to crawl in a corner and cry. I had so many emotions flowing through me. Satan is constantly throwing negative thoughts into my head. He tells me the treatments won’t work and that I’ll be put in the hospital in January. He tells me I won’t be able to graduate on time or get an internship. He tells me I’ll be too sick to finish school and get a job and raise a family. He tells me my dreams have been crushed. But, they haven’t. God has consistently reminded me that I have to depend on Him and trust Him. I am reminded that He is sovereign and He loves me and has  a plan for me. I am so grateful that I was able to come home after my appointment. I am thankful for my support system, and for the opportunity to work hard this next month to better my health. I pray that God will give me His strength and comfort, because I know I can’t do this on my own.

Today, I will be going to get blood drawn and do a sputum culture to find out what else is growing in my lungs. I will most likely get the results next week. Dr. Burk also instructed me to do some research on Allergic Bronchopulmonary Aspergillosis (ABPA). He says it is possible that I have this due to the fact that my last sputum culture showed aspergillus growing in my lungs. He asked me to watch for signs/symptoms of it and to keep him updated. So that is my homework for this month: to research, pay attention, get better, and to prevent the slow decline.

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3 thoughts on “The Slow Decline

  1. Jordan, I just read your blog. I Am so sorry that things didn’t turn out the way we all had hoped. I have told you many times that you are my hero! And you are! Please know that God has this. I cannot imagine what you go through. You are so strong all the time. I know that it is the alone time that is difficult. But, you are never alone! God is so good to always stand with us and hold us in the clutches of His arms. Always know you have a strong support system. I pray a hedge of thorns be constantly around you and Satan must depart from you. I pray this in Jesus name! Amen! I love you more than you will ever know.
    Granny

  2. Hi there! I just saw that your blog had been added to the cf blogroll (welcome!). I know this post of yours is a few months old, but I thought I’d chime in. 🙂 First, I also go to the adult clinic at Cook Children’s (I see Dr. Gilbey, and Cyndi is also my PA), and I feel like I’m in good hands there. Always nice to meet a “neighbor” patient! 🙂 Second, congrats on starting your college education and for choosing such a great major! My mom is a registered dietician who did her master’s thesis on CF nutrition, so I’ve been bombarded with the fact that good nutrition and CF are SOOO integral since I was very young. Nutrition is an extremely important and interesting field! (though, much to my mom’s dismay, I didn’t show much of a knack for it in college – a little too science-y for this liberal arts major 😉 ). Next, I just really want to encourage you as you start this journey of being an adult CF patient. It can be a difficult transition to making health decisions on your own, especially as your body continues to change and your CF with it. But don’t let this frustrating disease get you down! The Lord is in control and has a very special path laid out for you, and He is faithful to see us through the hard times of this life and this disease. He has used my illness and the frustrations and triumphs that go with it to grow me in innumerable ways, and I know He will be faithful to lead you in the same way. 🙂 As for the double antibiotics they put you on in the winter, that seems about normal – the double-duty helps prevent a build-up of resistance to the antibiotics (sorry if you already know all this!). And adding in new treatments is frustrating, I know, especially during your college time of life when you’re trying so hard to be “normal” and keep up with your studies and your peers. You just have to keep telling yourself that it’s totally worth a try (and all the extra time it takes!) if it means you feel better in the long run and you get to hold on to that lung function as long as you can!! Best of luck, and I look forward to reading your future nutrition posts! (sorry this post turned into a small novel)

    • Wow it’s so nice to meet you as well! How exciting! Thank you so much for all of your encouragement and your kind words. I’m definitely so grateful to be able to go to college and major in nutrition- it’s so cool your mom did her thesis on it! I wish you luck as well in all of your endeavors! 🙂

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